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  • HCM and sports Again

    [HCM and sports Again]

    Author: Michelle, Emily's Mom (---.hay.net)

    Date: 12-09-02 10:49

    Wow!!! Didn't know my original question would spark off so much controversy!

    Let's remember that I did mention I live in Ontario, Canada. With that said, perhaps people in the US don't realize the 'rights' that kids have here, one being that as of age 16, our Children's Aid Society (your child welfare) feels our kids are old enough to be treated as adults, and therefore make their own decisions regarding their lives, however we parents still have to support them financially until these kids are 18.

    First of all, let me tell you (and you Adam) that I'm an excellent mom, sometimes too strict and overprotective, but a great mom, not to mention one **** of an RN (oncology). I care deeply about the welfare of both my kids (one adopted, one birthchild). I do not allow Emily (now at the age of 2) to run until she's tired, but I do allow her to run. Being a nurse, I tend to watch Emily more intently than some parents do, and not a day goes by that I don't give her a physicaly check, including vitals. I've even cut my work down to 2 shifts per week in order to spend time with my little girl. Perhaps not enough know the stats of HCM, and you need to be educated on the fact that 1/2 of sudden deaths RELATED TO HCM occur during rest.

    Yes, Adam, you did make a career change that was for the better for you. You were able to make a choice you could live with. But the key words here are FOR YOU. What's good for you isn't necessarily what other's want.

    In Ontario, at the age of 16 kids are given the right to make this decision themselves, with no input from others. At the age of 14, kids have the right to voice their own opinion and have it enforced, if necessary. This is during a very tender age for those with HCM.

    Adam, we could use more law-makers here with as much passion for people as you have. However, until that time comes, parents are left to pick up the pieces.

    I choose to ensure Emily knows the risks, and that those around her know the risks of her HCM. Emily is not currently obstructed, and has been doing extremely well since birth. We have a double whammy, as Emily has Wolfe-Parkinson-White Syndrome, which sends her heart into tachycardia. Emily's at a very high risk for sudden death, and while I WILL have my say with Emily as for what she does physically for as long as I can, this still doesn't reassure me that she'll 'obey'. All I'm saying is that as a parent, I've accepted the fact that Emily will probably sneak around to do something, and if cardiac arrest occurs, I'm not going to beat myself up with the fact that perhaps I could have prevented her from going to the playground. I choose to make sure Emily lives her life to the fullest, the best way she can. I'm currently leading her towards a life of music, but as everyone here knows, what a parent dreams for their child isn't always what happens

    I live with Rheumatoid Arthritis, and while I am in remission now , I did and still do live with limitations. Most people have limitations of some kind. How you choose to live with those limitations is up to you.

    I say live life to the best you can, to the best of your abilities. Adam, you can live without sports, and I applaude you!. However for those who can't, NO ONE has the right to judge them.

    Let me just end with this statistic. If you drive after midnight, (and stats are higher on the weekend) you have a 22% chance of being hit by a drunk driver. 1/2 of this will die. Doesn't HCM take less than 5% of it's victims...

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Adam (199.88.72.---)

    Date: 12-09-02 11:51

    I appreciate all the points you made, however, I disagree with all of them. I do not care what "rights" kids have in Canada at 16. Parents still are morally obligated to be parents; it's that simple. According to your school of thought, in the United States when I turned 18, my mother had no say in what I did or how I conducted myself. That is an absolute farce. I do not doubt that you love your children very much. That is perfectly clear in your messages; however, it is also clear that for some reason you choose to hide behind the "law" in Canada that considers kids old enough to make their own decisions at 16. Just because they are old enough does not mean they are the only ones who decide what's best for them. I can tell you this, if my parent was so passive in allowing me to do things that could lead to my death, I would hate them for it to this day even though I am still alive. As for all the statistics, SO WHAT??????? Are you kidding me? Half of sudden deaths occur at rest from HCM....SO WHAT??? When do the other half occur???? Obviously they occur when people are not at rest. If you feel that is justification for allowing your children to remain as active as they want, then that is your own naivete at work. That statistic does not support your argument in the least bit. In fact, it actually justifies my ideas more than yours. As for driving after midnight, I can tell you this. That statistic is also completely erroneous. During my life I have driven after midnight probably around a thousand times, maybe more. Never have I been hit by a drunk driver, or come close to having an accident. Neither has anyone that I have ever known. Based on your numbers I would have personally already been hit by 220 drunk drivers. And I would have been killed 110 times. So far none of that has occurred. Furthermore, every single one of my friends and family members would be dead BUT THEY AREN'T. Obviously my sample of friends and family members is only approximately 100 people so the confidence interval is probably only about 90%, but that is still pretty good. But the real point here is your children and other children with HCM. If you choose to justify letting them risk their lives because they could die driving after midnight, well....in all honesty I feel sorry for them if that is the case because that is simply deflecting the responsibility you have and justifying it by saying that they could die driving down the street so why not let them do whatever they want athletically. Furthermore, you say that I made a good choice, FOR ME. Well I can honestly tell you that was a choice I NEVER WANTED TO MAKE!! You think I did it because I wanted to? I sure didn't. I did it because I didn't want to die. It took years to deal with my decision and now I am finally ok with it. No kid wants to give up their athletic career but most are intelligent enough to realize that life is better than death. Most smokers also know that if they want to live they will quit smoking. And many of htem do even though they are physically addicted to cigarettes. With HCM, kids aren't addicted to anything so it is just a decision that must be made. Live or Die???? It's up to the kids and the parents. Because if you allow your kids to choose to continue participating in competitive sports, you better be prepared for the worst. And in all honesty, god forbid, if something terrible does happen to any kid allowed to continue playing sports, I would never forgive their parents. It's that simple. This is not a joke. This is a kid's life we are talking about. I don't care if they have the right to do whatever they want in Canada. If my kids had HCM and we lived in Canada, I GUARANTEE YOU THEY WOULDN'T CONTINUE PLAYING SPORTS...It's that simple. I wish I could atleast say that i understand where you are coming from. But I don't and I never will. Also, I sense that you think you know more than me becuase you are an RN. I sure hope that isn't the case because no one knows more than anyone else with this disease regarding who could suddenly die. Yes, there are risk factors associated with sudden death. But yes, some people die who exhibit none of those factors prior to death. No doctor on the planet can predict who will die from this and who won't. So being a nurse means nothing in regards to this disease. I hope you don't think that because you take your daughters pulse and blood pressure regularly that she is "safe" from this disease. Anyhow, I am not remotely religious but I will pray for you and your daughter. Good luck to you both and I hope all goes well and that you are both safe from drunk drivers past midnight and that nothing terrible occurs due to HCM as well. Again, I do'nt apologize for my tone in this message. It is impossible for me to "tone it down" when dealing with this subject. I am frightened that there are still parents out there who simply refuse to be parents and that is unacceptable to me.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-09-02 12:19

    Dear Michelle and Adam,

    You are both entitled to your opinions on this very difficult issue. I hope that you can both step back and take a deep breath before responding.

    While the board is designed to air the issues, it is not a forum for judging others or yelling at each other. I must ask both of you to be more considerate of each other when you post.

    I appreciate how strongly each of you feels about your decisions and experience, but yelling won't get us anywhere.

    Thanks,

    Sarah

    (just doing my job)

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Adam (199.88.72.---)

    Date: 12-09-02 13:11

    I am not yelling. It is impossible to yell when you are writing something. I am annoyed and deeply saddened by this mother's lack of mothering, though, and that is something I will not apologize for. My opinions are based on compassion and love, not hate or anger, even though they sometimes are unintentionally magnified by the anger I have toward parents that don't parent their kids. One suggestion was that Canada have more lawmakers with as much passion as me.....Well that is absolutely ludicrous to even say. That simply has no bearing whatsoever on being a parent. Who cares what the law says??????? If the law allowed my teen kid to play sports even after they are diagnosed with HCM I simply would find alternate ways to ensure that they don't play sports. Parenting is not something that is put in black and white like the law. It is something you do on the fly and instinctually. There is nothing saying that parents can't use creative means to get their kids to behave in appropriate, LIFE PRESERVING ways. Anyhow, I could debate this topic for centuries, but as long as there are parents willing to not be parents to their kids I will never make any progress I suppose.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Michelle, Emily's Mom (---.hay.net)

    Date: 12-09-02 15:03

    Just think, all this started over 1 person's opinion and question over HCM and Sports...

    Adam, you are entitled to your opinions, as much as I am mine. Please keep in mind, however that I feel you are being very unfair to judge me based on an opinion, or judge me as a parent when you are not one.

    I was only looking for advice, not insults. I feel that a stupid question is the question that is not asked, and I do feel that other parents are dealing with the same issues.

    I don't believe I'll be coming back to this forum. I found many of my questions answered on here, but I can always go somewhere else.

    Adam, I hope your arrogance and judgmental views doesn't keep others off this forum. You know, you're not the only one out there!!!

    By the way, I do a heck of a lot more than than take my daughter's BP and pulse, but hey, you're living my life and you seem to know it all...

    By the way, you 'yell' on the 'net' when you use CAPITAL LETTERS or !!!! at the end of a sentence.

    but then, you probably already knew that, too...

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Adam (199.88.72.---)

    Date: 12-09-02 16:11

    Oh yes, one last point. I am the one who said that NO ONE KNOWS MORE ABOUT THIS DISEASE THAN ANYONE ELSE.....I then said that doctors know of some risk factors associated with HCM and sudden death but that no doctor on the planet can predict who will live or die. You are the one who started bragging about being a nurse, implying that you know more than me or anyone else about this disease. So I resent you calling me arrogant, when I never directly insulted you in any way, shape or form. I even said I would pray which is normally something I reserve for sick or dying family members. Anyhow, you are the one who made it personal, NOT ME. And that is why I will never visit the board again.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 12-09-02 16:35

    Michelle,

    Adam,

    Let us please not berate one another on this board. I do not say that to either of you personally, but as a general statement. In any forum you will get differing opinions. That is part of what makes for good conversation. But even when you don't agree with another poster, you should always temper your words. We all know the golden rule, "Do unto others....."

    I would hate to have either of you not visit this board any more because of differences in opinion. Both of you have a lot to offer this board and I think both of you can learn here. None of us knows all there is to know about HCM.

    To both of you, please consider what you "say" on these boards and how they will be read. I hope that when I write I don't offend anyone. It's just my two cents worth.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Bryan (---.bos.east.verizon.net)

    Date: 12-09-02 16:37

    As I sit and read this I have to laugh. It sounds like two children fighting. There is no book on wrong parenting and if there is can someone tell me where to pick it up cause my fiance is pregnant and I would love to get a head start. People dont agree with other things people do, or say and there is nothing wrong with that. I check this board everyday reason being I think it is very helpful and interesting. I dont check this board cause I think im back in my highschool debate class. People are intitled to there own opinions which is great but to be little people like both have done or be little ones decisions, its really not called for. In no means do I think the question was unrealistic, nor do I think the answer was.

    Michelle it was a good question but you really dont have to worry about that right now. Live for today... The past is behind us, the future is in front of us but, the present is a gift so enjoy it as you go.

    Adam the answer was also a good one but answer it as what you would do for your child not what other people or how other people should raise there child. If something did happen to a child you wouldnt be the one who would have to forgive that parent. 2 wrongs dont make a right but 2 rights make a fight.

    I dont want to speak for anyone on this board but if both of you dont want to visit this website anymore that is also YOUR decisions. Is it fair to both of you to not visit this site again because of one disagreement? Thats a question you would have to ask yourself.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Tom (---.eosinc.com)

    Date: 12-09-02 18:07

    I hope you two both come back to the boards because the community of HCM patients is small enough. Fact is, we need each other. We need Michelle for what she experiences and learns from her child and we need Adam for what he experiences and learns. I hope you two can agree to disagree and we can all move forward. Let's put this energy and frustration into what's causing all of this to begin with... this disease. Let's all join hands and do what we can to further education and healing....

    Let's sing Koombaya too.

    Later all-

    Tom

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-10-02 01:32

    Hi,

    Frankly, the shocking thing is that this board has been up for several years without anyone having to ask anyone to settle down. I think that speaks very highly of everyone who posts here and the respect that we show for each other.

    Adam, writing in all capitals is the web version of yelling. Michelle, Adam is 22 and feels just as strongly as you do about what is right and wrong.

    Pointing fingers and name calling are unacceptable behavior and if you can't post without doing so, then by all means refrain from posting.

    However, we will all be happy to see both of you here whenever you post with consideration.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Glen (65.247.42.---)

    Date: 12-10-02 04:34

    WOW, I just yelled, I hope you all took your beta-blockers today cause there looks like there was some heart pounding going here, maybe a skipped beat or two.

    This cannot be a black & white issue, on one side no activity and on the other side let them do as they please. I don't think either of you are saying that.

    Adam says no competive sports which doesn't mean no physical activity and I don't think Michelle said anything about competive sports. I read, unless I missed something, she meant normal 2 year old activity and that was somewhat limited.

    It also depends on the severity of the HCM. As you all know that can vary from no activity to moderate exercise which thankfully I am allowed with my HCM docs blessing.

    Emily's doctor, hopefully an HCM doc, would be the best judge of that and whether her activity needs to be curtailed or stopped altogether.

    By the way Michelle I also live in Ontario (Whitby), who is Emily's doctor, mine is Dr. Wigle at Toronto General.

    Adam I absolutely agree no competive sports, there are far too many stories about young athletes dropping dead, although most of them didn't know about their condition. Hopefully as Emily grows up knowing she has HCM she will learn her limitations based on how her condition changes over the years. **** maybe by then there will be a miracle drug or better that allows normal activity.

    In any event don't leave the board, we need you both, Michelle we need to know how Emily progresses and Adam we need to hear your thoughts and opinions the same as we need to hear everyone elses.

    I too monitor this board on a daily bases and I respect everyones opinion or coarse of action even if I don't always agree.

    Don't make rash decisions over a single disagreement.

    Good Luck to both of you and Emily, stay well.

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-10-02 10:38

    HI ... your fearless leader here...

    Well well... I take a few days to catch up on other issues and look what happens.

    Adam - I do hope you will come back to the board as I think you offer a wonderful view point that will prove helpful to many. Further, if you do plan on heading into law as your occupation be ready for many disagreements...it will be a daily part of your life.

    Sarah - Thank you for keeping the peace.

    Michelle - A 2 yr old is far different then an older child and try all you want there is no way know to man to stop a 2 yr old from being a 2 yr old. Monitoring activity as she grows is the key. Also I was unaware of the law in Canada regarding childrens healthcare and I am interested in learning more, can you provide me with more information?

    The rest of you...thanks for the input and the humor... I think this thread got a little to tense.

    Regarding children with HCM taking part in sports, all we can do is help guide parents to information and help kids learn about the condition so they make wise choices. We WILL change the world...it is just going to take a little while.

    Sincerely,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM and sports Again]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-10-02 12:02

    Lisa wrote:

    **Michelle - A 2 yr old is far different then an older child and try all you want there is no way know to man to stop a

    2 yr old from being a 2 yr old.**

    After reading this I had to think back 16 years to when our now 18 year old was 2. He broke his leg. And it was a nasty break requiring a cast from the ankle to above the knee. Doc said "Keep him off the leg as much as possible" YEA RIGHT! Just how do you do that with a 2 year old?! No way possible! Sooooo,I am now reminded how impossible it would be to keep a 2 year old with HCM "slowed down"!

    Michelle, I truly hope you stay around! We have all expressed some very strong "opinions" in this discussion and many of us learned something from it. Some of us were even reminded of things we already knew! (like me knowing how hard it is to keep a 2 year old slowed down!) We all want to stay up to date on Emily as she grows and wish her the best.

    And Adam, many of us with older kids really appreciate your insight into how you handled the strong feelings of anger, anxiety, fear, etc. as they enter their teen years. It is my experience with Andrew that these years have proven to be the toughest yet, as he is beginning to have a complete understanding of his disease. And he is fighting many new emotions about it. I have found your posts very informative and they have helped me in the difficult conversations with Andrew. Hope to read more from you too!

    Dolly (Andrew's mom)
    NOTE: This is a post from the previous forum message board.

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